Should My Son Go Back To Gluten For More Testing?

[krisb]

My 11 year old has been gluten free and feeling pretty good for a while now. He is growing really well. He used to be in the 10th percentile for height and now has caught up to the 50th. He was scoped about 3 years ago and had a lot of damage to his belly and esophagus. His genetic tests and bloodwork all came back positive. The only thing we weren't sure about was if his villia was damaged. Anyway, he has been getting some belly aches and some reflux so I took him back to another gastro. I really liked this Dr. and she is treating him with prevacid for now. But this is the second gastro that insist we need to put him on gluten and do more tests. I really don't feel comfortable with that. I told the Dr. that he gets very sick if he makes a mistake. There is no way he would survive eating gluten for 3 or 4 months. She said that eventually we need to know if he is celiac for sure or if it's just an intolerance in case he wants to cheat later in life. But it doesn't make sense to me. He could be intolerant this year and become celiac next year. He shouldn't be eating gluten anyway right. It makes him sick. Now that my son is getting older he was very excited that the Dr. said he can eat gluten again. He wants to do this even though he knows it makes him sick. What should I do? My 8 year old is always questioning if he can eat gluten also. I considered putting them both on gluten and testing them both at the same time. Our house is gluten free.

Has anyone tried going back on gluten for more testing? it just dosn't feel right to me. He has always been so sick and anemic and now he looks and feels so much better. I would be afraid to go backwards but I want him to feel comfortable with his diagnoses also.

[Fiddle-Faddle]

My 9-year-old has never even had bloodwork. We figured out after my diagnosis and subsequent diet that his severe eczema and tummy aches were due to gluten. We went back and forth on the diet a few times, and EVERY time he had wheat, the severe eczema AND the tummy aches came back. He didn't care SO much about the eczema, but at the second round of tummy aches, he said, "that's it--I'm never having gluten again."

I see no reason to damage him and risk something horrible in his future, like lupus, or cancer, just "to be sure."

I figure, by the time he is an adult, researchers will have figured more out. In the meantime, I make him everything he wants gluten-free from scratch, from pizza to cake to bread for his sandwiches. So he's not missing out on anything he likes, and he's OBVIOUSLY not missing out on anything nutritious, since he is actually able to now absorb the nutrients from his food!

So I see absolutely NO reason to put him on gluten. But that's just me.

What does the doctor care whether she is sure or not, so long as your child is healthy? I do wonder about the belly aches and reflux, though--that is a gluten symptom, or maybe a symptom of something else going on, and all prevacid does is mask the symptom--it doesn't address the cause.

Could there be another food intolerance, like dairy or soy? Or something like a hiatal hernia? Or could he be getting glutened without your knowing it? Maybe at school? Or something silly, like licking envelopes?

[JennyC]

If his blood work and genetic tests came back as positive, I'd say that you have your diagnosis. In addition, his symptoms went away and he started growing once you removed gluten. In my opinion, I would not put him back on gluten for tests. It seems like gastros are so concerned about teens cheating if they don't have flattened villi. If your future teen starts cheating, then you could do the gluten challenge at that time. They can also make that choice as an adult. In my opinion, parents are doing the right thing when they remove a substance from their children's diet that is causing them harm.

Good luck with your decision. I'm sure you will do the right thing for you and your family.

[krisb]

[quote

What does the doctor care whether she is sure or not, so long as your child is healthy? I do wonder about the belly aches and reflux, though--that is a gluten symptom, or maybe a symptom of something else going on, and all prevacid does is mask the symptom--it doesn't address the cause.

Could there be another food intolerance, like dairy or soy? Or something like a hiatal hernia? Or could he be getting glutened without your knowing it? Maybe at school? Or something silly, like licking envelopes?

[Fiddle-Faddle]

There are a few people on this board who are intolerant to lectins. Potatoes, I believe, are lectins. You might want to look up lectin intolerance, or else pm Ursa Major, who has a lot of research and helpful info on multiple food intolerances. (She is glutenfreeforum's resident expert on multiple food intolerances, having many herself, and children and grandchildren as well.)

That way, instead of depending on the doctor to tell you what to eliminate or reintroduce and when and why, you can make more informed choices yourself.

About your recent unexplained glutenings: would you be comfortable posting a typical daily menu of what you and your little one eat? That way, someone here might be able to pinpoint either hidden gluten, or a source of cross-contamination, or some kind of intolerance that might be common among newly diagnosed celiac children, etc.

I would also caution you to do a lot of research on vaccines (www.nvic.org is a good place to start). One interesting piece of info that was posted here a while back was that, until quite recently, a derivative of peanut oil was used in vaccines as an adjuvant (to stimulate the immune system to produce a stronger response)--hence, the humongous increase in peanut-allergic kids. But more urgently, a child with any kind of intestinal problem, especially a leaky gut (as we see in celiac), is at significantly greater risk of adverse reactions from vaccines.

I am not saying to never vaccinate. But I can't emphasize enough how much more prudent it is to:

1) give only one vaccine at a time, NOT 3 or more

2) avoid any with thimerosal, which is 49.6% mercury (a well-documented neurotoxin) --this includes the flu shot, and older versions of the chicken pox vaccine.

3) avoid unnecessary vaccines, such as the second MMR (1 shot provides lifetime immunity to 95%--the second shot is totally unnecessary), and hepatitis B (which is primarily transmitted by infected needles and sexual contact, so if you and your child don't sleep around or do drugs, there is no need for this shot until much, much later).

Another thing you can do is to keep 2 detailed diaries. One would be of EVERYTHING that goes in your kid's mouth, and the other would be of every symptom you notice (even things that don't appear to be dietary reactions, like eczema, balance issues, and joint pain, can be symptoms. The second diary should also include behavioral issues (good/bad sleep at night, good/bad moods, days when he appears to have made developmental strides or backtracking, etc), to help you track what might cause what. It's very time-consuming, of course, but might make all the difference in the world!

[Fiddle-Faddle]

I also wanted to add that a friend of mine noticed amazing results in her son's eczema when removing gluten from his diet. However, his doctor insisted on putting him back on gluten for testing. His eczema came back--100 times worse than it had ever been, and took several weeks to clear, where it had cleared withing a few days the first time. And her child now seems sensitive to everything under the sun--soy, nuts, dairy, etc. Whereas, when he first went off gluten, he had no problem with anything else.

I can't understand how any doctor can in good conscience tell a parent to purposely cause damage to their child for a test when the answer is already obvious.

[gfp]

She said that eventually we need to know if he is celiac for sure or if it's just an intolerance in case he wants to cheat later in life.

Then surely the time for testing is when he WANTS to cheat ???

I can't understand how any doctor can in good conscience tell a parent to purposely cause damage to their child for a test when the answer is already obvious.

Dr's doing this should be struck off, pure and simple....

We all laugh when House does something like this thinking "Dr.s wouldn't deliberately provoke a condition that may have consequences for the rest of the childs life" yet it happens everyday with Dr's trying to satisfy their curiosity...

The child was ill, you took away gluten and ... hey he's well. He gets a little reflux (and I know it can be scary ...) and the Dr wants to poison him???

Check this: Open Original Shared Link

So Parent: "My son had intense sleepiness, vomiting, convulsive movements and dilated pupils, we removed the laburnum tree in the back garden and he got better.... anyway we were at a friends who has a laburnum and later he was very sleepy and vomited"

Dr. "Well, lets get him eating laburnum seeds for a month and see if he gets worse"

Hey.. what would happen to that MD ???

If you can't for the life of you picture this then put the face of Hugh Lorrie instead of your MD....

Heck, even House would be saying that with deep deep sarcasm ....

In my opinion, parents are doing the right thing when they remove a substance from their children's diet that is causing them harm.

Exactly, if he doesn't have flattened villi then what ?

Will you just encourage him to eat gluten till he's so sick the villi do flatten? Of course not (hence your asking the question) ..

The blood tests tell you all you need to know, especially combined with the response to diet, biopsy's have false negatives ... especially in young kids. Like Fiddle-Faddle said, you stand some chance of provoking something serious.... it might be small but I see no possible value to the biopsy and more importantly the gluten challenge.

Its one thing for the MD to suggest this, he's not the one looking after your son! I very much doubt he would put his own child through this!

[krisb]

[quote

Parent: "My son had intense sleepiness, vomiting, convulsive movements and dilated pupils, we removed the laburnum tree in the back garden and he got better.... anyway we were at a friends who has a laburnum and later he was very sleepy and vomited"

Dr. "Well, lets get him eating laburnum seeds for a month and see if he gets worse"

[Fiddle-Faddle]

gfp, I love your point with the laburnum! In the US, you could substitute "peanuts," and even the gluten-ignorant would understand! May I steal that point for future use????

kris, Honeycomb does contain oats. Oats are kind of iffy--many celiacs react very strongly to oats, partly because they are grown on the same fields as wheat and processed in the same mills, which means cross contamination with gluten is a pretty good bet. And partly because avenin, the minor protein in oats, is molecularly similar to gluten.

"Oat is the only cereal containing a globulin or legume-like protein, avenalin, as the major (80%) storage protein. Globulins are characterized by water solubility; because of this property, oats may be turned into milk but not into bread. The more typical cereal proteins such as gluten and zein are prolamines (prolamins). The minor protein of oat is a prolamine: avenin." --from Wikipedia

On the other hand, many celiacs seem to be fine with oats, and there are studies posted on celiac.com saying that oats cause no measurable damage to celiacs

But at this stage of the game with your little one, I wouldn't try oats until EVERYTHING has cleared up, and then I would go with the (expensive ) certified gluten-free oats (grown on separate fields, processed at separate plants).

I would also get him off dairy until all is well. At this point, do you know for sure whether he is reacting to the lactose in the milk or the casein? If it is the lactose, it might be because the intestinal villi are supposed to produce the lactase (the enzyme that processes lactose) he needs; if he has villi damage that has not finished healing, he not only won't produce lactase, but casein might prevent the villi from fully healing.

[krisb]

[gfp]

gfp, I love your point with the laburnum! In the US, you could substitute "peanuts," and even the gluten-ignorant would understand! May I steal that point for future use????

Of course or you could use poison ivy ....

[Fiddle-Faddle]

If he is still allergic to legumes can oats cause a problem? Is that the same legume like protein?

He was found to be lactose intolerant when he went for all the testing. He was never able to tolerate dairy as a baby. He was pretty allergic actually.

I don't mean to be rude, but I can't help wondering at the competence of the doctor who determined him to be either lactose intolerant or allergic.

If he's lactose intolerant, then he is reacting to the lactose (the sugar in the milk), as the name suggests.

If he is allergic, then lactose isn't the problem; casein (the protein) is the problem. Then you're talking a whole different mechanism, and different symptoms, not to mention a different way to deal with it. And you would use completely different tests for each.

You can remove the lactose from milk. You CAN'T remove the casein. In fact, many supposedly dairy-free products like soy cheeses and creamers DO contain casein--which means people who are allergic to dairy CAN'T eat them without getting very sick.

Either way, it does sound like he should not be consuming any dairy products for now. He's old enough so that you can make sure he gets enough calcium/vitamin D/magnesium, either by pill, or by other dietary sources (better than pills, anyway).

Many dairy-sensitive people seem to do well with goat's milk and goat's milk cheese and sheep's milk cheeses.

Sorry, I can't add more right now--have to run! But I'm sure if you do a search on the board, you can find some threads on milk substitutes.

[krisb]

The lactose intolerance was diagnosed by a gastro who ran a ton of tests on him. His allergist diagnoses his allergies. He is technically not allergic to dairy but used to be when he was younger. You can be intolerant to dairy anyway and that is why I would remove it entirely for now. I talk to an allergy group who I get a lot of my food advice from. I have nursed children who couldn't have dairy, eggs and other things so I know how to replace all that. Plus I can't have dairy either. All my children have had a dairy allergy and we had to replace that in there diets for the first couple of years. It's not too bad and we are all used to special diets. When I was talking to my son about how we should change his diet a little he said he has no problem not having dairy but he really doesn't want to stop eating potatoe. He tested very positive on a skin test and the blood tests to that. We just don't see an imediate reaction and that's why the allergist said to just eat it. The gastro Dr. said we should eliminate it in case he is getting a delayed reaction to it that causes his pain.